Sunday, January 18, 2015

My Spoon Theory Spoon

I have been concentrating this month on recovering from the flu and a virus that knocked me out and set me back over the holidays. With that, I've consciously decided what I can and cannot do in a day and examined my priorities. To that end, I now have an email Inbox today with over 1,500 emails in it. As I started going through them, I realized how many were just nothing I needed to read. And once I started feeling anxious by the sheer enormity of the task, I stopped ... and with no guilt. I also can't always read or write because of tremors or eye problems, so blogging has taken a back seat, too.

Another time, on another day. It's OK.

I've been doing micro-blogs, if you will, on my Facebook page. I honestly have a ton of things running through my mind to write a blog post about, plus I need to do a magazine review this week (crossing fingers), but if there's anything I've learned in the past month, it's to recognize what's most important on my list for the day and not plan too far ahead. That's a novel idea for me, a person who in the past meticulously mapped out plans and charted progress.

Many of you have heard of the Spoon Theory, a wonderful story about what it's like to be chronically ill. Here is my very own spoon, bought for me by Rick:

Bought via Etsy a while ago but now I can't find the artist. Dang.

I've been applying this method of counting my spoons for a while, but now, along with counting my spoons, I'm counting my blessings on my current Facebook posts. It's a way for me to focus on the positive and write it down so on really bad days, I can look back and see that I did push through in the past. I've made two such posts so far and they've been received well.

However, there's a significant problem in posting online when I always feel like I've been hit by a truck of needles. If I post something here, on Facebook, or elsewhere, many people automatically think, "oh good, she's finally well" ... and get frustrated with me when the next day I'm not.
Unfortunately, making a post or "liking" a few items doesn't mean I'm 100%, or even 50%. It usually means I'm desperately trying to connect with another world beyond my bed or my house for five minutes to distract myself. What people see is a tiny snippet of my day. They don't see the cold sweats, the fevers, the 30+ pills, the truly disgusting and hideously expensive liquids, my struggle to do something as simple as dry my hair.

The majority of my meds. Some are taken three times a day, most at least twice. And some aren't shown.

I completely understand why people are just so OVER IT with those they know with a chronic illness. People naturally run from what they're afraid of, which is not to say anyone is weak for not sticking by, but that they are human. The ill are human, too, but they don't feel like it many times. As time goes on and our symptoms don't go away or a new malady gets added, it can really be hard to reach out to anyone or even admit to ourselves that things are just stalled. We don't want to be a burden, a drama queen, a negative source of energy. We want to be "normal", but we also want to be heard, understood, and loved anyway.

I've also recognized that it's incredibly easy to let illness become my first priority, which is backward. It should be HEALING that is my first priority, and there's quite a lot of difference between one and the other. Focusing on each aspect of the illness(es) can make anyone depressed. Just looking at the bottles above can seem completely overwhelming, until I look at them again and realize, these are what I need to get WELL. Stop taking things, and it all goes to hell, so I try very hard when I'm taking those pills and getting those shots to think "this is one more step forward", even when I feel miserable and like I'll never be right again.

I've done a lot -- a LOT -- of research on Lyme, Babesia, migraines, and a lot of it might seem dire. Many people diagnosed in late stage are just going to have to come to terms with this the rest of their lives and focus on living at 80% or 50% and making the best of it. It's impossible not to occasionally wallow and cry and say, "WHY ME?". Human. Understandable. But there has to be something good out of your day that you can think of in the midst of the crap, even if all you can think of is you're glad your pillow is soft. Millions of people don't have a soft pillow. That's a very simplistic way of looking at it, but if that's all you can come up with at first, that's fine.

Just try, each day.

Lori Anderson creates jewelry and bead kits as well as collaborative mixed media art with her son, Zack. Visit her shops by clicking on the right side bar of this blog (please and thank you!). She is also the creator of the Bead Soup Blog Party® and author of the book "Bead Soup" via Kalmbach Publishing.

20 comments:

<3 don't post your happy things for other people... post them for yourself :) As you said, it's to remind *yourself* that the days have bright spots, no matter how little or seemingly insignificant they may be to others.

My heart aches to know how much you're suffering to get through each day, but it also soars with amazement at how strong you are, and how much you inspire people just by being you :) You don;t see your strength since you remember when you were stronger and always compare the two, but trust me, you are strong and brave.. you face the fear and pain head on and do your damnedest to keep going and not give in a fraction more than you absolutely have to. Keep being you :)

Your posts are inspiring to read. I hope and believe that those who follow your blog are pleased for you when things go well, and understand that it's not always straightforward, that there are complications and lots of crappy stuff. Your courage and honesty are what make your writing so compelling.

Totally agree with everything Skye said. I'm just happy that you are even finding one bright little sunny spot in your day. No matter how small, that still matters, more than you can possibly know. I have just this past year starting living by law of attraction principles, and have seen tremendous positive changes in my own life, just by changing my attitude and my focus. I realize it is harder to think positive when you're in pain all the time, but even the small things will help to become bigger positive things. I am focusing my energy on seeing you whole and healed. Hugs :) <3

While I cannot personnaly relate to your illness, I can understand , to a degree, your emotional rollercoaster, if you will. My father passed awat..10 years ago on Jan 27. He suffered through 12.5 months of useless cancer treatment, that made him sicker and sicker. He told only a handful of people of his condition. During his final 2 1/2 months on this earth, i temporarily moved in with my parents. I did it for him, for my Mom, his constant caregiver, and selfishly, for me. I tried to cram in everything that I needed to hear or say to this man who gave me life in 8 short weeks.

When he passed, before my eyes, I was the one who called his friends, called the distant relatives, etc. most did not even know he was sick.

My point here is that by his not letting others know of his condition the last year of his life, he missed out on so much. He didn't want to "bother" people, or "cause them undo worry". Pfff...He gave up...and, you cannot!!!

You keep writing when you can. Continue to see the snippets of good in your life. It is so important to your inner well-being and positive attitude...and your healing, too!

You have an army behind you, cheering you on. There is not a single day that goes by when I don't think about you and pray for your continued progress!

Thanks for sharing the Spoon Theory. It's a great way to explain to people, and I love your spoon! It really is difficult for people without it to understand chronic illness and disability. They want to walk away from it - and they can when the person who has it can't. I'm glad you write what you want, positive or negative. That's what's going on in your life. I enjoy all your posts and blogs and look forward to reading more whenever you have a chance. I'm glad to see you taking care of yourself by doing what you can and not what you think you "should."

Lori Dear you are always in my prayers and receiving healing energy. Sometimes just living one minute at a time is enough to move forward. Loving yourself and honoring your feelings are of top priority dear. You are loved my friend...

Lori,I always look forward to your posts on Facebook and the blog. You must do what is best for you and only you.I love that you shared the Spoon Theory again - I need to share that with mom.You take care!I love your spoon too!

Lori I am so pleased that you are *Keep on keep on* No matter what. You are a very courageous soul. I am so glad that I know you I think and pray for you many times a day. You will get thru this and wonder how in years to come. My friend reminds me that "If GOD. Brings you to HE will bring you through it. I keep that in my forethought. Be blessed to be a blessing

Lori, I totally understand how you feel as I have been going through much of the same thing this past year as well. Following you has kept me going. I have wanted to email you but I know it is hard for you to read your emails. I understand your spoon theory because I do it too. I like you don't want my illness to be the focus of myself or others around me. I am tired of trying to explain what I have to people that have never heard of it. I have wanted to tell you to research chiari because even though you have good doctors a lot of your symptoms are the same as chiari and even most dry do not recognize this condition and often misdiagnosed as fibro, Lyme, ms and a host of other things including depression and psychosomatic illness. For seven long years I searched for what could be wrong with me and even was told by two doctors it was all in my head. Turns out it was but not in the way they thought. Recovering from brain surgery is a daily battle. I like you miss the person I have lost through this so I understand totally how you feel. I hate I can't concentrate to read and can't seem to want to concentrate to bead. Beading was my way of distressing. I looked forward to bead soup blog party each and every time. I lived and slept beading. I miss having my super memory as it is now long gone. I get it. I have learned to enjoy the simple pleasures. I hate the pain and try to push through but some days you just can't. I have days I spend all my spoons just trying to be normal only to have to spend mAny dAys gaining them back. It isn't fun and it is easy to ask why me. I know there is something for us on the other side of our illness. It might not be what it was before. It might be something totally different. We might be going through this to inspire other with hope and understanding. I know you have helped me through my darkest days in mAny ways even if you were not aware of it because I haven't felt like typing. You may in a different way be inspiring Zack to live a compassionate and creative life in the future. We can't see the why but I have to have faith it is there even if I can't see it. Do what you can when you can. We will come out on the other side. You are loved and respected by many and those that don't understand are not meant to but there are plenty of us who do and that is a big giant spoon in my book just for you.

Lori, I'm so sorry that you're in pain. I was in constant pain for over a year with my double shoulder injury, so I know what it's like to feel like washing your hair or putting on non-pajamas is a huge accomplishment... and the only thing you have energy for that day.

You're handing this so much better than I did. I am blown away by how darn smart you are. I love the idea of focusing on getting well, not on being sick. That attitude will take you far.

And if there are days when you can't handle what's going on, I promise not to judge you or think of you as negative (I don't like that word, honestly -- it so often gets in the way of compassion). I'll be there for virtual hugs, sharing cute puppy photos, and... maybe sending links to relaxing music? I'm an emotionally crippled person and prone to disappearing into this air, but I shall do my best.

Hi Lori, I always enjoy reading your posts. You have a way of writing that is yours alone. Even when what you are saying is not pleasant I find it inspiring (maybe more so then). I have read your spoon theory before but it is good to be reminded. If there was a way I could take some of your pain for you I would gladly do it. I think of you often and I always hope that you are having a good day to spend with Zack. Please enjoy each little thing as you are able to and don't stress about the rest.

You truly are an inspiring lady Lori. I know that you can't see it but just the fact that you keep going even when you are hanging on by the barest thread just goes to show how strong you really are. You touch and enrich so many myself included. Please keep posting your bright spots as that way I know that you are feeling at least well as enough to touch bases.

this was a beautifully articulated piece of writing. i feel a sense of clarity here which is a tremendous accomplishment given all you are dealing with. but the shifts are noticeable and incredibly powerful. empowering. you are a teacher - with compassion and patience, with a desire to cultivate understanding - you are showing people how to help and understand those who face serious challenges, especially of a medical nature. this is important - important because we care about this incredibly generous heart that is you and want for you to heal. but also important because it is relevant. thank you -

I'm glad whenever I see a post from you. It is a precious jewel from a person I admire greatly. And I always end up crying over something someone wrote in response. You don't have to be whole, or well, or awesome to make a difference.Thanks for hanging with us, however you can, and whenever you can.Love you dear!

Lori, its amazing that you are so bravely facing your illness and not letting it over power you. I am impressed by your will power, even after suffering so much, you still could do so much work! Writing blogs, social media. More power to you and get well soon!